Shared Decision Making Requires Good Communication

We live in an age of patient empowerment. Medical students are now routinely taught that the “right choice” often depends on patient preferences—on how an individual patient weighs the pros and cons of her treatment alternatives. That means medical decisions depend, more than ever, on good communication. Physicians need to help patients understand their choices so that they can partner with their patients in discovering the best alternatives, ones personalized to fit each patient’s individual preferences.

But helping patients understand their treatment choices is often no simple matter.

In my book Critical Decisions, I provide a word by word account of an earnestly communicative hematologist describing the risks and benefits of treating leukemia to his patient. The hematologist tries to explain that there is a good chance the patient’s tumor will respond to chemotherapy.

“So if you look at complete cytogenetic response rates in the chronic phase,” the hematologist explains, “it’s about 80%, and if you look at the accelerated phase, it’s about 15%. So, the drug doesn’t work in advanced disease very well. If you look at patients who get a complete cytogenetic response as their best response in the Iris trial, their risk of ever progressing in the next 4 years, so about 48 months roughly, is about 8% overall.”

“That’s good,” the patient replied.

“Yeah. So, and this is divided into people who become Philadelphia chromosome positive but appear to be in chronic phase. And half of these are people who go to accelerated phase or blast crisis. If you look at people who had complete cytogenetic response, this is people who had complete cytogenetic remission at any time of the trial, … if you look at people who are at complete cytogenetic remission at 6 months like you are, this is probably less than 5%, so.”

“Over 4 years?”

“Yeah,” the doctor replied. “Now if you look at the curves, truth be known, there’s a steady decline. It’s about a risk of losing progression overall in the study of somewhere between 2-4% per year.”

“Say that part again,” the patient interjects, “because I didn’t quite follow you.”

The patient is understandably confused. In less than two minutes time, she has been deluged with numbers: 80%, 15%, 48 months, 4 years…whose head wouldn’t be spinning? Later in this conversation, during an appointment that lasted more than an hour, the patient would learn that if she goes into complete remission (one of those numbers from above, I think), she would still face a 5% risk of cancer progression over the next 4 years, and a 4% risk (time-frame unspecified by the physician) of expressing new chromosomal changes. If she has a recurrence, she can get a bone marrow transplant (which led to a 5 or 10 minute conversation laying out the odds of surviving such a treatment, plus the odds of experiencing graft versus host disease: “there’s about a 40-50% chance you’d need some therapy for that. And then if you are an unrelated donor and a match, it goes up to about 70% …”), with the subsequent risk of chronic relapse of 5 to 8% depending on …well, does it really matter anymore?

We physicians are a highly numerate group of people. To us, numbers are second nature. In many doctor/patient encounters, in fact, physicians unwittingly flip back and forth between percentages (“3%”) and frequencies (“8 out of 100”). After all, isn’t 3% the same thing as 3 out of 100? But for many patients, this back and forth is incredibly confusing. Look what this back and forth did to Yogi Berra, who, when asked by reporters to explain the intricacies of baseball explained that: “90% of the game is half mental.”

Good decision making often depends on good communication. The patient empowerment revolution succeeded in convincing most of us physicians that patients deserve an important role in making medical decisions. Now we have to find better ways of helping doctors and patients talk with each other, in a language each party can understand.

About the Author:

Peter Ubel, M.D. is a physician and behavioral scientist at Duke University. He is the author of Critical Decisions: How You and Your Doctor Can Make the Right Medical Choices Together. He blogs at www.peterubel.com and you can follow him on Twitter @peterubel.

5 Responses

Peter, I love this post, and mostly agree with you. Mostly. The physician numeracy aspect is–at least in my experience–one that would benefit from a lot more study. I think many specialists (and sub-specialists, say pediatric urologists) have these numbers and rates at their fingers. But it’s harder to come by in primary care and I’d also aver that doctors can rattle off the stats, but may not be able to fully explain why patients should care about relative vs. absolute risk, or whether they themselves understand some of the biostatistical nuances that would lead them to recommend treatment A vs. treatment B. So in short, there’s still work to be done to raise collective numeracy in health care for doctors and patients alike.

Oh thank heavens you’ve addressed this mumble of numbers numbing us patients. Happened to me when well-meaning rads oncologists’ explanation of stats had me leaving her office saying, ‘no thanks not worth it.’ It was my brother-in-law an ObGyn,also trained in statistical analysis who put percentages into perspective. That decision made a lotta people happy (my pals, colleagues) The lesson there for me: shared decision-making does not happen exclusively in the doctor’s office: often input from our community – the people that know us in between doctor’s appointments – also carries weight.
Thanks again. So great to have this issue acknowledged.
Kathy Kastnerhttp://www.BestEndings.com

[…] Peter Ubel demonstrated that even well-meaning attempts to give patients the information they need to make a decision, it’s easy it is to quickly overwhelm patients with a tangle of numbers, percentages, duration and medical jargon. How can patients and practitioners find a common language? […]

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